One of the more salient and concerning items of medical news reported this past week is an analysis by the CDC indicating that there is 10 times as much Lyme disease in the U.S. as formal reporting channels suggest. Rather than the 30,000 official cases each year, which would already make Lyme the most common tick-borne illness in the country — there are roughly 300,000 cases. An increase in Lyme prevalence by an order of magnitude is a disconcerting proposition.
The report, which was issued at medical conference in Boston, combines findings from three separate, ongoing studies overseen by the CDC. One is looking at medical claims, another at lab reports and the third is a survey of the population. The new estimate is the result of triangulating the findings of these diverse approaches, thus lending hybrid vigor to the enterprise.
But before we make this news sourer than it already is, we need to note that this does not mean that Lyme disease rates have gone up tenfold. The data in question are comparing actual rates to reported rates, not comparing trends over time. The new report does not indicate anything about a sharp rise in Lyme disease — just a prevailing tendency to underreport. It still matters that there may be 10 times as much the disease among us as we officially recognize, but it’s not nearly as worrisome as a sudden explosion in the number of cases.
Then again, Lyme disease is cause for concern at almost any level, let alone at the impressive prevalence the new data suggest. The condition is caused by the bacterium, Borrelia burgdorferi, transmitted (as I suspect everyone knows) by tick bite, and specifically in most cases, the blacklegged tick. The bacterium is classified as a spirochete, the particulars of which need not concern us here, except to note that the germ responsible for syphilis, Treponema pallidum, is in in this same category.
Syphilis, a scourge since long before effective treatment was available, is notorious for progressing through complex stages and involving multiple organ systems over a span of decades if left untreated. The Lyme organism can do much the same. Just like Treponema pallidum, Borrelia burgdorferi can, given the opportunity, invade and damage the central nervous system. The late stages of both syphilis and Lyme can impair the functioning of multiple organ systems, the nervous system prominent among them.
So, there is no question about the existence of chronic Lyme. What is controversial is the validity of chronic Lyme in the aftermath of a full course of antimicrobial therapy.
In some cases, a “full” course may not be enough. Like any germs, the Lyme organisms can develop partial or even complete resistance to specific antibiotics. In some cases, the course of treatment may not be long enough to fully eradicate the disease, or the drug chosen might not be optimal. Treatment can fail. But usually, it succeeds. Given that a full course of appropriate antibiotic is administered to susceptible organisms, the evidence is strong that this reliably does the job most of the time. When treatment is prompt and the disease in its early stage, it is almost invariably cured.
And yet, many people report “chronic Lyme” in the aftermath of what should be decisive therapy. Some go on to get very extended courses of antibiotics, which in some cases still fail to resolve the clinical syndrome — or do so only temporarily.
Some such patients, including some in my own practice, undergo very extensive testing to determine if viable organisms have somehow dodged all those bullets directed at them. That testing can include a lumbar puncture with culture of cerebrospinal fluid, one of the places the organisms can hide. When even that is negative, it does indicate with a high degree of reliability that the organisms are indeed dead and gone.
Consequently, many Lyme experts, including my colleagues at Yale, go to some length to refute the validity of “chronic Lyme.” In the absence of the infecting organism, a chronic infection simply isn’t possible.
This is certainly true, but it says nothing about symptoms. The persistence of chronic symptoms after an infection, and the pushback by experts that this is not “chronic Lyme” have led to what some now call “the Lyme wars.”
The wars are an unfortunate distraction. Is the persistence of symptoms from an infection possible long after the infecting organism is gone? Of course. Just talk to anyone using braces after a polio infection decades ago.
The adamancy of some experts that chronic Lyme following effective treatment doesn’t occur, and the insistence by patients that it does may miss the essential point: something is still wrong with these patients. Maybe only the experts are qualified to say if it is Lyme infection, but only the patients can say how they feel.
My own clinical experience indicates that there is a syndrome of chronic symptoms post-Lyme infection. It may be because of injury to the immune system, the nervous system, or due to these and/or other effects. But just as the poliovirus can infect, be dispatched, and leave permanent effects behind, we don’t necessarily need to find viable Borrelia burgdorferi to have lingering consequences of their temporary stay.
In my clinic, and many others, we work hard to treat the aftermath of Lyme accordingly, with varying degrees of success. The infection should be treated decisively, certainly. Once it has been, any lingering symptoms should be given the full measure of respect they deserve and treated diligently as well — whether or not they have anything to do with ongoing infection. Patients should perhaps be less adamant about why they don’t feel well, since it can be hard to know. But clinicians are well advised to remember that only a patient can say how she or he feels –and ultimately, that’s really what matters most.
The one aspect of the debate with clear practical implications is that if chronic Lyme symptoms are due to chronic Lyme, more antibiotic treatment is warranted. If such symptoms are due to the lingering effects of a vanquished infection, antibiotics may be ineffective and more likely to do harm than good. A shared understanding of this between patient and clinician, and a willingness to listen to one another, should allow for the right kind of personalized care.
Fortunately, though, this challenging area is just a small part of the Lyme disease landscape. The large number of cases to which the new report refers mostly represents early-stage Lyme. When identified and treated in its early stages, most Lyme gets better.
This is what the literature tells us, but being a Connecticut resident, I have seen it up close and personally as well. I have treated Lyme in patients, friends and relatives alike. I’ve treated myself for it twice over the years. My horse has been treated several times and some years ago, I had to take one of our dogs to a veterinary hospital at 3 a.m. for what turned out to be Lyme disease, the responded promptly to antibiotics.
A report highlighting the prevalence of Lyme should raise awareness and suspicion, increase early detection and extend early and effective treatment to more of those involved. That’s the good news in a seemingly bad report. This analysis may also stimulate new efforts directed at Lyme prevention by various means, from tick control to immunization.
While waiting, we all have means to defend ourselves. These begin with prevention, most of which is common sense. Clothing can be used as a reliable defense against both excessive sun and ticks. Pets can be treated appropriately so they are less likely to share viable ticks with us. Showering promptly after outdoor activities that represent opportunities for ticks is likely to send them into the plumbing before they can dig into our skin. Ticks need to be embedded for 24 hours or more to transmit Lyme, so just having a tick crawl around a bit and try to get settled is not a danger.
I suspect we are all familiar with the adage about doing the best we can with a bad situation: when life gives us lemons, we are supposed to make lemonade. If 10 times more Lyme among us is the lemons in this case, I’m not sure there’s lemonade to be made. Perhaps that’s just as well, since lemonade tends to be loaded with sugar, and that carries its own liabilities.
Lyme is common, but no more so now than before this report — this is simply recognition of what has been, not a portent of some new threat to come. More awareness means more reliable prevention, detection and treatment. We may not have a recipe for lemonade here, but we have no reason for panic either.
David L. Katz is the founding director, Yale-Griffin Prevention Research Center.